Living bravely

Please Don’t Anger Shame Chronically Ill People

Nobody likes to be around angry people. I think that is a given. So, let me start off with a clarification. I am not promoting being a bitter and nasty person. I am coming to the defense of those of us who are chronically ill, sometimes with rare diseases, who are angry for various valid reasons.

When doctors don’t do their job correctly or family members judge and misunderstand you, a natural human response is to get angry. When you watch your life being stolen from you by an unknown illness or by a disease that causes you to be incapacitated, you get angry. When treatment does not, as promised, give you your health back, it’s easy to get angry. When you can’t find any answers or treatment, anger can consume you. Anger is not evil. Anger is not the enemy. I think it’s worth reiterating — anger is part of being human.

A lot of times as patients, we are labeled as “angry” or “hostile.”

I spend a lot of time educating doctors on my condition because it’s rare. So, naturally I get frustrated and annoyed with doctors who don’t really want to listen with an open mind. I’ve spent hundreds of hours researching my illness, not for fun, but to learn. I don’t like being dismissed by a doctor who is supposed to help me.

I was recently in the hospital with my mother who was sick. When I walked past the nurses station that was right across from where my mother was in the ER, I smelled strong perfume. I have allergies and a condition called Mast Cell Activation Syndrome. I almost passed out and threw up from the smell. I was angry. First, because hospital protocol is not to wear any perfume while you are on the clock. Working as a nurse in the ER, you should know better. When I asked for my mother to be moved because the nurse wreaked, they looked at me as if I was the problem. When I asked the nurse for ginger ale for my mother, she told me to go down the hall and get it myself out of the fridge. I replied, “Ok, where do I clock in?” This left me looking like the sarcastic, angry guy.

While there are many great hospitals and wonderful doctors, it seems for every wonderful doctor, there is a horrible doctor. Our healthcare system is severely broken. Sometimes the deficiencies are too overwhelming for a chronically ill person to deal with on a weekly basis. Anger sets in — and rightfully so.

Being sick is not easy. It involves a series of judgments from society, family, friends and sadly, the medical community. It involves a battery of terrible doctor appointments, uncomfortable tests and rude staff. (Yes, there are some good doctors and friendly staff, too) It involves dealing with the grief and depression and anxiety of not being able to live a full life. It involves dealing with medication side effects that cause more harm than good at times. This can be infuriating.

Don’t blame patients or chronically ill family members or friends that are angry. Don’t allow them to abuse you either, but definitely bring your compassion to the table and try to understand all we go through and why we might be angered. We are fighting a constant war. A war against our minds and our bodies — a war against the world that just doesn’t always get it.